It was a cold November night when we arrived at grandma’s house.  Eager to stretch their legs from a 4-hour drive, our kids sprang from the car and ran to the front door only to be received with warm hugs and kisses from loving grandparents.  It was an especially tender time as our petition for a heart transplant was denied.  We were on borrowed time. 

In the marrow of my soul, I knew time was short, and that frightened me.  A few weeks before this photo, I sent a message to family letting them know Mitch was in trouble. 

In part of that letter, I wrote:

“Today Natalie and I sit with Mitch on the edge of an invisible cliff.  He can't see it, but my wife and I can - and the mouth of the abyss is yawned and inching to devour our son.  Yet, Mitchell looks out into the vast horizon unaware and envisions a long, bright future ahead of him.  In his little mind, he is already making big plans.  He wants to build a home next to ours with a tunnel connecting our basements, so he and his dad can watch movies and make popcorn.  He wants to work for his dad when he's older.  He talks about his own kids one day and how he’ll raise them as we raised him.  As he points to his vision of the future with youthful enthusiasm and a zest for life, he doesn't realize that he sits on the outermost edge and the ground from under him has crumbled away into the darkness – and his little body is hanging on by a pebble.  What Mitchell doesn't understand is the beautiful horizon he sees is only a mirage, and in reality, the sun is setting on his own life.

 Mitchell is too young to know what’s happening.  If he knew how close he is to completing this mortal journey, he would be terrified.  And we can’t bring ourselves to let him know the mortal danger he faces.  And we won’t.

 I write you today not to seek pity or sadness – but to alert you to his situation and invite you when you see him next, to give him a little more attention and love than usual.  We don’t know how much time we have with him, but the hour is late and midnight uncertain, so we want him to feel loved and appreciated during whatever time he has left.”

 I was very emotional at the time.  The simplest trigger would send tears streaming down my face.  A pothole while driving, a ray of light, or a fleeting memory that crossed my mind – everything was a trigger.  Though my heart was fragile, I tried to hide my sorrow from my son.  I didn’t want him to be afraid of something he had no control.  Suddenly, I understood like never before, how much a parent wants for their child’s happiness; and to see our children suffer is an agony for which there is no equal.

“Suddenly, I understood like never before, how much a parent wants for their child’s happiness; and to see our children suffer is an agony for which there is no equal.”

— Christopher M. Jones | Mitchell's Journey

So, when my mother said, “Mitch, I have a surprise for you,” and my little boy smiled, my heart was awash with gratitude.  My mother knew Mitchells’ favorite dessert was chocolate cake from Costco – and Mitch knew it, too.  As our kids gathered in the kitchen and Grandma began to slice into that chocolaty goodness, Mitch had a smile that made my heart sing.  It was a simple thing to remember Mitch and treat him with something he loved – but I’ve learned that the small and simple things are really big things.

As I tucked Mitch in that night, he said in a soft tone, “Dad, Grandma is so nice to remember I like chocolate cake from Costco.”  I paused a moment, and Mitch then asked, “Are you crying?”  I whispered, “Son, sometimes moms and dads cry when special things happen to their kids.  Our hearts explode, and it squirts out of our eyes.”  Mitch giggled a little and snuggled into a deep pillow, ready to visit a place of dreams.

Mitch knew there were sweeter things in life than chocolate cake – and as much as he loved that treat, he loved the sweeter things of life even more.  The loving kindness of a grandparent, a simple act of service, or a friendly hello meant more to Mitch than all the candy on earth.

As I reflect on my son’s journey, though it broke my heart, I am so grateful for my mother and the sweeter things of life.  For when all seemed dark, it was these little moments that broke through the shadows and shed a little light.  I will thank my Father when I kneel before Him tonight.

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About a year after Mitch passed, Wyatt asked to visit the cemetery, so he could reflect on life and remember his older brother.  Young Wyatt began to notice his memories were fading and said in a tearful tone, “I’m afraid of forgetting my brother.”  Wyatt and I sat on the west side of Mitchell’s headstone as the sun began to set.  I just listened to Wyatt share what was on his young mind and little heart and how much he wanted to be a good boy and follow the example of his brother.   

“... to be remembered is not the substance of life – but paving the way for others is.”

— Christopher M. Jones | Mitchell's Journey

On Mitchell’s headstone, I could see Wyatt’s reflection inside his shadow and took this photo of what I saw.  I couldn’t help but think how quickly memories can fade if we’re not careful to record them.  I also began to think how quickly we can forget some of life's most important lessons.  I hope always to remember the people and the lessons – so that I might grow from the love I felt and the things I’ve experienced.  That’s why I do the work of remembering (writing about) little Mitch and our journey with him.

I recently read an article about grief where the author said the greatest fear of a parent who lost a child was having their child forgotten by others.  While that may be true for some, that’s not how I feel. 

It wasn’t many years ago I was working on a documentary and stumbled into an old funeral program from the early 19th century.  Printed on the cover was an almost daguerreotype image of someone reminiscent of the pioneer era.  Written boldly on the cover of the program were the words, “Gone but not forgotten.”  I immediately thought to myself, “If only that were true.”  There, in my hands, I may have been holding the only visual breadcrumb of that man’s existence … evidence he walked the earth and had an impact in his sphere of influence.  It was clear he would be missed by those who knew and loved him, yet generations had since passed, and that lone memorial somehow found its way into my hands.  As far as I could tell, the memory of that good man was all but a vapor.  His memory scattered like dust by the winds of time.

As I’ve reflected the harsh reality, I began to examine why I write of little Mitch. I determined that I don’t write to fixate on the past but to learn from it and change how I step into the future.  I don’t write to keep his memory alive in others – instead, to keep his memory alive in me.  I write so I can make sense of suffering and remember the lessons I’ve learned through heartache and a veil of tears.  I write so I might look heavenward and learn what I must – for all too soon, my time will be up, and I will fall into that deep sleep from which there is no return.  One day, I will be like billions before me --- gone and soon forgotten.  That’s fine by me; for, to be remembered is not the substance of life – but paving the way for others is.                                                                                           

I suppose that’s why I share my journals – so perhaps a flickering candle of faith might light the path for someone else walking a dark road.  When people write me private messages after having read an entry and share how they went their knees and asked their Father if He lives, and how they received an answer, I weep tears of gratitude.  When a mother or father shares how they’ve become more loving or in the moment with their child, my heart is made glad.  Those are the reasons I share stories of Mitch – not that people will remember my son, but that individual lives might see something anew and make a change for the better. 

This work of remembering (Mitchell’s Journey) is about the examined life and making a change for the better.  For it isn't enough to remember the people and events in our lives ... but instead to find meaning.  And if all these stories amount to helping a single soul, even if it’s just one;  my heart will be full, and an important work will be done.  

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A few weeks ago Natalie secretly arranged a surprise visit from my mother for my Birthday.  I was in our basement working on a Mitchell’s Journey video for December when she called and said, “Hey Chris, someone’s at the door, would you mind getting it for me?”  When I ran upstairs, opened the door and saw my mother, my heart melted.  I couldn’t imagine a better way to spend a day than with two mothers that I loved with all of my heart.

We sat in our living room and talked for a while.  Natalie, ever thoughtful and selfless, seemed so happy to give me the gift of memory – for in that moment we were in the middle of making one and my heart was full.  I kept looking at the sweet smile on my wife’s face and took this photo.  Behind her was a photo of Mitch which seemed a fitting metaphor for this sweet woman.  Wherever she goes, Mitch is never far from her heart. 

On this special day, Natalie and my mother arranged to make an old family recipe – something that has been in our family long before anyone seems to remember.  We call it Chili Sauce, but it resembles nothing of traditional chili – not in taste, texture, or purpose.  It’s not a meal, it’s a condiment.  I remember my mother making that sauce when I was a young boy.  Once prepared, it would slowly simmer on the stove all day.  When I’d step off the bus from school, I could smell it a block away.  By the time I entered our home, the air was rich with aroma.  Heaven seemed so near.  After bottling, our home would smell of this sauce for days.

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My mother knew I loved that sauce, and so did Natalie.  So, spending time together, making an old family recipe was my gift.  Mitch grew to love this sauce, too.  In fact, he called it “Grandma Sauce” and always put it on scrambled eggs or toast.  For a few years prior to Mitchell’s passing, it became a tradition for my mother to come to town near my birthday to make this great recipe. 

You can find this recipe below, for those who want to try it.  I haven’t met anyone who didn’t love it.  I hope you do, too.

As Thanksgiving nears, my heart fills with gratitude as it turns to my mother and the mother of my children … and all mothers everywhere.  I’m so grateful for all you do to make this world a better, more caring place.  With all the garbage and scandals we see on the news today, I hope society experiences a renaissance ... a fundamental shift … a return to dignity and respect for women everywhere.

I always admired the way Mitch loved and honored his mother, and I will spend the rest of my days following his tender, noble example.

Click on the image below to open, then print.  The boiling of this recipe is my favorite. The aroma is simply amazing.

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More photos from this special day:

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In November 2012 we were nearing completion of our basement in preparation for putting our home on the market.  We wanted to get into something more suitable for Mitchell’s growing medical needs and hoped to simplify our lives a little.  Though everything seemed to fall into place at the time, things didn’t turn out as we planned.  In retrospect, I can see that all that happened was, in fact, Heaven’s plan. 

While construction was underway, we received two large cardboard boxes, each containing a bathtub.  Wyatt and Mitch immediately staked their claim on each box and wanted to make forts of them. 

Every morning Wyatt would come up with a new way to configure his fort, and we’d find him breaking his box down more each day.  His box was akin to cardboard origami, and we never knew what shape it would assume each day.  It wasn’t long he broke his box into oblivion. 

By contrast, Mitchell’s box was always in mint condition.  In our living room, he carefully placed his box fort next to an electrical outlet on the wall.  He then approached me and whispered, “Dad, will you help me cut a hole in the box?”  I giggled as he pointed to the outlet.  Mitch then ran a cable through the box so he could charge his iPod.  He also asked me to cut a few secret flaps, allowing him to get a beat on people who were approaching him.

When visitors came to our home, they’d enter our front door and see a large box just a few feet away.  It never bothered us.  While we always keep our home clean and orderly, Natalie was never caught up with pretense, pomp, and show.  She cared far less what others thought, and instead focused on helping our children learn and grow.  I’ve always loved that about Natalie – she always chose the better way.  For years, our China cabinet was a showcase for Lego creations, not fancy dishes.  And when it came to any part of our home, it was dedicated to children’s youthful adventures.

Mitch slept in his box fort almost every night for well over a month.  Sometimes he imagined his fort a pirate ship flying through a sea of stars; other times, his cardboard box became a log cabin deep in a dark forest. 

At bedtime, we’d tuck him in, and he’d fall fast asleep surrounded by his dreams before dreams. 

When I examine my footpaths as a parent, I always find myself treasuring the little moments far more than the big ones. I hope to always remember what I learned from Mitch; at the end of the day it's not the things we get but how well we play. 

I love moments like this … building blanket forts, box forts, or cuddling on the couch.  Fancy things are great, and all … but they get old and decay.  And to worry about the opinions of others ... well, that just gets in the way.  But the soul of a child is forever, and they are here to stay.  So doing things that build their minds and hearts is always the better way.